Boxing Day Rant (Merry Christmas - Part 3)

My apologies to all, but there are things I've been wanting to get off my chest and having yet had the chance to do so.

As has been said earlier, Karli and I have both hit the wall. I was hoping that an early start to my holidays and our break down in Busselton might change that, but as yet we aren't perking up too much. For my part, I have been on the verge of tears at the drop of a hat over the past week. Whether it's the extra time and space to think, or the more intense time being spent with my two babies, I don't know. I do know I don't feel particularly refreshed, and am unsure that much will change during my last week of holidays.

Our little boy is battling along. He's ratty and clingy again thanks to the steroids. Unfortunately he is also dealing with the side effects of the methotrexate, which he hasn't had for a while, and has never had intravenously. So he's a bit more lethargic and unsteady. It's nice to have so many cuddles though. The hard part is trynig to figure out what is going on for him. I'm sure he must feel really crappy, but he just can't say anything.

It was good to see some of our friends in at PMH on Wednesday. We talked to the parents of the little girl who was admitted around the same time as us. She has finished most of her treatment for now and is coming in every month or so for blood and urine tests. She looks so good now. Her hair is growing back and she has put on a heap of weight. It's lovely to see her looking better. The little guy only 2 weeks older than Oliver was able to go home for Christmas for a few days. He still needs regular antibiotics injected, but the home nurse will be doing that. Unfortunately he will be back in on Monday for daily radiotherapy. Hopefully his treamtment is coming to a successful end in the next month or so. It was lovely to see the mum and daughter who were in the room when we were initially admitted. It was heart breaking to learn that, after having completed treatment for a relapse, she has relapsed again. I couldn't believe the beautiful and genuine smile I got when I said hello to the little girl. She is amazing. And our ever present friends from Mandurah were still there, trekkiing back and forth from Ronald McDonald House. I don't think they have been home for any reasonable length of time for about 3 or 4 months.

"I cried because I had no shoes, until I met a man who had no feet". You may have heard this little proverb before. It kind of sums up my mindset. I find I waver between mourning the plight of my little boy and rejoicing for the way in which he is overcoming it. I want to be positive, but there is always a little voice in the back of my head reminding me that the tough part may be coming to an end, but the road ahead is still long. In the midst of my negativity I summed up life in two sayings.

Life is never so bad that it can't get worse.

You might be doing it tough, but someone else is doing it tougher.

Not the most cheery sayings, but they keep me on the cautiously optimistic side of life.

Probably not as much of a rant as I first expected, but I'm tired, and I'm off to bed. Some very cute photo's and video to leave you with. I really should be more optimistic.

Walking with my trolley in Busselton

Cuddles with mum in my monkey towel

Bathtime with dad

Cute cheeks

Opening a present from Uncle Gordon, Aunty Tarn, Tyran and new baby Jyden

Merry Christmas - Part 2

I was supposed to write last night but didn't manage it. This is the second part of my Christmas entry, the less joyful part, so be warned it may get a little negative - and could be a little disjointed too. Part 1 was written last night and is a little more upbeat.

We were back in PMH yesterday. Oliver started cycle 6 of his treatment. He received some methotrexate and vincristine, and we started his home doses of mercaptopurine and steroids last night. He could get pretty clingy today, but I think I might be in the mood to just hold him.

You might remember Karli mentioning that we had both hit the wall - thus the reason for me beginning my holidays earlier. I'd like to be able to report that we are both re-energised and have been positively charged over the past week and a half, but we are both still flat. I'm not sure what it is. It doesn't feel right for it to be about Oliver's cancer since he is handling treatment so well, all things considered. Admittedly, there is likely to be some background stress related to it, but given what I know other parents are enduring, I feel like I need to take a toughen-up pill and enjoy my child's health. I think that I might be slowly finding the time and space to process the past 6 months. Some of it is bound to be the fact that we are here and not in Canada as I had hoped this time last year.

Ooops, Christmas just started. There will be a part 3.

Have a lovely Christmas. Give your loved one's an extra tight hug.

Merry Christmas - Part 1

This entry will be written in two parts. This is the joyful part.

I love Christmas. How else do you explain my Christmas vest and flashing santa hat? I love this time of the year. I love shopping for presents for everyone. Secretly I feel a little ripped off by doing Kris Kringle/Secret Santa with the Tate family because I don't get to buy and wrap as many presents (but of course it's not so easy to buy for everyone anyway, so that's a good thing). I like looking at the lights and decorating the house. I like the t-shirts everyone wears, and how everyone seems to be a little bit more cheerful - I suspect that people are actually like this most of the time, it's just that they are allowed to be more jolly at this time of the year. I love that people are more generous. I love seeing the looks on children's faces as they talk about Santa and what they would like for Christmas. I love that some semi -random stranger came in to the hospital today (he was a father of a cancer survivor, and a cancer survivor himself) and handed out extremely generous gifts to sick children and their families. I love that Dr Angela wore a flashing santa hat. I love that PMH was decorated long before our house even got sight of a decoration (except for the ones I had left up from last year). I love the story that goes along with Christmas. I love that my eternity was too precious to be left up to me and so I was shown grace by the birth of a small child. At this time of the year, I'm like a child in a toy shop, and if I am actually in a toy shop, I'm worse. I wish you a very merry and joyful and loving Christmas. May the day fill your heart and remind you of all that is good, and may you have a safe, healthy and fabulous new year.

Cooler Weather

It's a cooler day in Busselton today. It rained this morning and is now blustery. I like it this way. It's much more conducive to reading and writing, and a lot easier to keep Oliver comfortable in.
I went for a jog with him this morning. Despite my job, I'm not really fond of running for running's sake. I prefer to chase after a ball of some sort. So I really have to keep pushing myself. I found that I really just wanted to walk. It was all a little too hard and painful. And I thought, how soft am I. How dare I say that it's all a bit too hard given what my little boy, and many other children, are going through? I've often wondered if I would have the strength to endure what they endure, and often doubt I would. Needless to say, I kept running. It was my own little bit of suffering, for what it was worth.

Ch-Ch-Ch-Changes

Not that I'm a fan of the song or the band, but it seemed and appropriate way to write the title. Much has happened in our little world over the past week, all of it positive. Let me set the current scene. I am sitting outside the Tate family (Karli's family) park home down in Busselton. Karli is off for a walk and our little man is sleeping soundly in his room. On Wednesday, Dr Marianne gave us the go ahead to wander down this way with the assurance that they work very closely with the Bunbury Hospital and she would have no reservations with them rendering some assistance to us should we need it. needless to say, by the time we got back home we were already sorting things out and were packing the car first thing Thursday morning. We will be back for Wednesday. The reason for our pass was because Oliver's neutrophils had been high for a while (highish for a child with cancer and undergoing chemo) and since he didn't receive treatment on Wednesday, he was probably in the best place to safely go away somewhere. So here we are. Not all is well - Karli did wake me up at 5.50am to tell me she was going for a walk. I can only put it down to the cool sea and country air.

On Wednesday we were informed that the study that Oliver is on has been suspended due to an unacceptable level of toxicity in patients on Oliver's treatment arm. This sounds bad, but what it means is that the benefits they were seeing from giving the vinblastine weren't enough to justify the side-effects. This means that Oliver skipped his treatment Wednesday (he was due vinblastine) and will now begin his next cycle Christmas Eve. He will be moved back on to the standard treatment arm and since this is the start of a new phase, there will be some other changes.

At the moment, we have been told that because of Oliver's size, he is not due any more doxorubicin as was first thought. Initially we were told he needed to meet a minimum accumulated dose, but this doesn't apply because Oliver's dose was calculated per kg and not by surface area like some of the larger and older children are. Because he is not receiving vinblastine, it also means he won't be receiving weekly treatments, so he will only be receiving chemo for the first 5-6 days of every 3 week cycle. That is very exciting. We will probably still need to take him in for blood tests each week, but that's no big deal. I suppose that will mean I need to make a decision about what I will do with work as well. He will still need to have his magnesium and fluconazole each day, and his bactrim each weekend, but it would seem that things are getting a little better.

Merry Christmas to us.

Positive vs Negative

It is Sunday morning and on my walk yesterday I was thinking about writing on the blog and wondering how I would entitle it, as it turns out the day got away from me and Simon beat me to it last night. I read Simons entry this morning and was amazed at just how positive it was and I told him so, he said 'Oh I forgot that I was going to write that we had both hit the wall and that is why I am on holidays a week sooner than I had planned'.

So this is where we stand - EXHAUSTED! I am so grateful for Simons wisdom, last weekend just before we went away he said out of the blue I am going to finish work a week earlier and I was quite surprised, but encouraged him in it and as the week went on I saw the wisdom in his decision. Oliver finished steroids almost a week ago, but this is always an exhausting time, this time especially because he is wanting to be walking but unable to do so on his own, made even more difficult by the cast he had on his arm, not to mention the fact that Oliver has had a cold now for 2 weeks and I dont see it going away anytime soon as what does he have to fight it? I found myself wiping his nose every 5 minutes, picking him up regularly and bending over helping him to walk - its no wonder I couldnt stay in bed this morning when I got the chance as I had a sore back.

I was reluctant to leave our child in this state to go away and in fact made the decision to cancel it just a few days before, but both Simon and I seemed so flat after I made that decision and I knew we had both been looking forward to it and that we needed the break and to assuage my guilt, I told myself that we would be better carers for having the break, which is true, although after only being back a couple of hours, we felt like we needed to go away again. Nanna & Grandad did really well although Sunday morning was particularly tough as Oliver got them up at 5:15 and then would not go back down for a sleep until 10:30 when we arrived home. I then felt that Oliver was a bit toey for the next few days, crying when we put him down or when he saw other people and I couldnt help wondering if he thought we were going to leave again? We think this is why he now screams his head off when we try and put him to bed at Nanna's, he kept it going for an hour the other night, even with reassurance from us, although because he has been unwell he hasnt really slept much anywhere else, so it could also be that.

During steroid time I found myself taking Oliver out because it seemed far easier to deal with him in the car or in his pram, where he was content than his constant neediness at home. Needless to say come Tuesday afternoon I had a sore throat and felt exhausted. So much so that Simon took Oliver to the hospital on his own Wednesday and I got some extra bedrest.

So our plan for this week is to rest. Simon has agreed to look after Oliver more so I can go back to bed or do the relaxing things that I enjoy - reading, watching dvd's & doing crosswords. My concern is that Simon too is exhausted, so I have asked him to let me know when he needs a break and perhaps we will do half days each.

We did have good news regarding Olivers treatment on Wednesday and that is that they are postponing his Christmas Eve treatment to New Years Eve, which is a relief, otherwise we would have been dealing with a steroidal monster on Christmas Day. Christmas for us looks to be fairly relaxing, which is just what we need, the 3 of us will spend the morning together and then head to Mum & Dads for lunch with a small number of family as opposed to the giant family bash at our place last Christmas.

So what do I look forward to? I look forward to winding down and relaxing more, to spending family time with my husband and my son and I do look forward to celebrating Christmas. The one thing I have found that comes with winding down is the grief and for me I am finding that it comes in waves. Speaking of waves, Oliver has learnt to wave and he was waving at the rubbish truck the other day and I felt overwhelming sadness that my innocent little boy is battling cancer. Then last night after getting angry with McLeods daughters for killing off Alex and leaving Stevie devastated and shedding a few tears for her, I then found myself going to check on Oliver and sobbing myself. I find that the first emotion I feel is anger and then the sadness and the tears come. I ended up going in to comfort him as he was unsettled and had tears all over my face and this super loving little boy who gives the 2nd best cuddles in the world after his Daddy, gave me a big cuddle, then sat back in my arms and was looking me in the face, touching my face, almost like he was wiping away my tears, putting his fingers in my mouth also, which caused me to giggle which then led him to giggle. After I put him down the real sobbing began as I wondered how this little boy who has been through so much can be so loving.

So this might be more than you bargained for in reading our blog today, but this is the raw truth as I like to tell it. Two positive things that I would like to share is that on those hard days last Monday and Tuesday, my Dad came and took Oliver for a walk in the pram to give me a break which was great. The other thing is that we have been going to a biblestudy group with people from our church (Whitfords) and it is a place where I feel like we belong. We were due to go there for the first time right before Oliver was diagnosed, so they have been praying for us every step of the way. We had our last study night the Tuesday before last and we all shared how the year had been and I valued being able to share openly and honestly with this group of people and hear their stories. We then had a bbq together last Sunday and again I felt so loved and welcomed by these people whom I dont know very well as we only managed to make it to biblestudy less than a handful of times.

For those of you we will not see, please have a safe and Merry Christmas and we look forward to venturing with you into 2009.

Lots of Love
Karli

Long Time between Drinks

It's been a while since I have written on the blog. I finished up work for the year today and am looking forward to a few weeks off. I'll kick off again in the new year. Karli is currently enjoying watching her favourite program - McLeod's Daughters. Needless to say, I'm not as keen on it.

Our little man is sleeping soundly. He began the last cycle in his consolidation a week and a half ago. While he was on steroids Karli and I headed off to celebrate our 10 years of marriage and left him at home with Nanna and Grandad. We had a lovely night off, and he seemed to handle it fine, and Nanna and Grandad too. He does seem a little dubious about whether or not we are around at night though, and is not at all keen on going down at Nanna and Grandad's. Hopefully we will be able to sort that out this week with a few trips down the road to play at Nanna's and lot's of kisses and cuddle's from mum and dad.

He had his cast removed on Wednesday. Without it he has started to lift himself up onto his feet and to climb a couple of stairs. He is also much more mobile on all fours, and is spending a lot of time walking alongside the couch. I'm hoping that by the time I head back to work he will be running us ragged. We've had a few trips to the hospital the past week to have his nasogastric tube reinserted. We hadn't been in for quite a while, then he decided to start at it a couple of weeks ago. Actually, the day after Karli's last entry, while I was still down south, he pulled it out, so you can add that to Karli's rough day while I was away.

Christmas isn't far away - as if you didn't know. We are steadily building up a pile of pressies to wrap for our little man. I'm not sure he'll know what's going on, but I'm excited about seeing him surrounded by toys and wrapping paper on Christmas day.

Standing up against his gift from Santa at the Kids Cancer Support Group Christmas Party.

A quick photo before heading back to PMH to have his NG tube reinserted.

We discovered that our little man hasn't finished with the doxorubicin. He needs to get a certain amount during the course of his treatment, so it looks like we will have more of it on the way. It's probably not that much of an issue given that it doesn't seem to affect him much any more, but it will be nice to have it taken out of his regime eventually.

What a Day!

I promised Simon that I would write on the blog, so here goes:

Hello folks, I know it has been a while since I have written to you, it is not for my lack of wanting to share but more my finding others things to do that seem to be more important at the time. The fact that I have this evening polished off two glasses of wine and 1 bar of chocolate may give some indication of the day I have had. Well as you all know Wednesday's is hospital day, but today I did it alone as Simon was down south helping out with some abseiling and getting a well deserved break! Normally we leave the house at 8am, needless to say I found out on my own, we left the house at 8:30. On a funny note, Oliver's favourite book of the moment is "The Wheels on the Bus", which he himself picks out of the bookshelf and so whilst trying to eat breakfast this morning, in between mouthfuls, I was singing the song whilst reading to him. In fact he will not sit still for any other book at this point in time. Speaking of sitting still, that is not his favourite activity at the moment, his favourite activity is trying to walk - evidence of his broken wrist, which by the way is mending nicely and his cast will come off in 2 weeks - yay! Oliver is managing quite well with his cast on though and continues to crawl, the most frustrating thing is that he wants to constantly be helped to try and walk which can become tiring after a while.

Anyway back to our day. By the time I got to the hospital I was exhausted. We spent a bit of time waiting around to check on Oliver's arm, but not much time waiting on Ward 3B which was good. Oliver did not have treatment today as he has missed his third week of treatment for a couple of cycles and could therefore not have treatment today, however the obligatory finger prick was still taken. I dont even know what his blood results were, but Dr Angela said unless I had any concerns that we could go, so I didnt argue with that. As a side note, Oliver almost choked in the car this afternoon as I had taken his bandaid off his thumb earlier and it continued to bleed so I reapplied two bandaids which he proceeded to bite or suck off and try and swallow, luckily spitting it out and me reaching over and retrieving it at the traffic lights.

At the traffic lights you say, you might ask "Where were you headed?" Well we were headed to Edgewater to the home of our very delightful cleaning lady to get the set of keys to our house which she had used to enter our house earlier today and clean because my set and my mums spare set I could not get to work in our front door. However whilst on the way to her place, Mum phoned to say that she had got into our place using her spare set - so who knows? Simon has had trouble with his keys for a little while, but today is the first time I have had trouble with mine. So after having been out all day and getting home after 4 to find I couldnt get into our house, was none other than frustrating. I must say though Oliver is a blessing, he was so good and let Mummy put him into his car seat again and drive to Nanna's to hang out there till a suitable solution was found.

After the hospital, we had a birthday lunch for Elisa who arrived home from Sri Lanka yesterday at Kathryn's place which was lovely and the highlight of my day. Anyway the day ended with getting home at 6:45pm, Mum helped me to feed Oliver and get him ready for bed - thanks Mum and by 7:45 I had the house to myself and a bottle of wine to finish, having done precisely that whilst watching 'Criminal Minds', my favourite show, I opted to write on the blog whilst having a cup of tea and ofcourse finishing off the bar of chocolate that I started whilst on route to Mums today after not being able to get my key in the door. I know this reeks highly of my comfort eating and drinking - sorry you will have to forgive me for that.

All in all I survived the day, hospital and all on my own, so I am proud and I have plenty of stories to tell Simon when he arrives home tomorrow night.

Thank you for following our little mans journey.

Lots of Love

Karli

What Cast?

You would think that it might slow him down.

Another Milestone

By now you will have noticed our little man has a new addition - a plaster cast immobilising his left arm. You'd think he'd had his fill of medical procedures for now, but apparently not. In his eagerness to get walking Oliver has broken his arm. We think it may have happened a few days ago, but he only made any noises about it as I headed in to hospital today. He didn't seem too happy when I grabbed him by the wrist - actually, he screwed up his face and started to cry. He was happy enough using it, but didn't take to kindly too any pressure. So the lovely Dr Angela organised for an x-ray of his arm and sure enough, a nice little crack through his radius. So we headed down to see the bone ladies and got a nice big plaster put on.

Did I mention that only I went in to hospital this time. We decided that we would try to see how it went since we are weaning him off some of his breastfeeds, and mum needed a break. So for dad's first solo visit, we walked out with a plaster cast - nice one dad. It actually went quite well. Our baby is becoming a little boy and isn't quite as needy as he used to be.

Here he is with some of his new books that Sue & Bruce bought him for his birthday. Thanks Sue and Bruce - they're fantastic.

Toys & Books

It's 9pm. Karli and I have just finished reorganising Oliver's stash of toys. It's hard to know which one's to pass on, which one's to keep for later, which one's to keep for now. Is cuteness a legitimate reason for keeping a toy? It doesn't help that some are actually ours and have some sentimental attachment. I'm hoping that once he is able to dig through things himself, he will quickly help us to work out what stay's and what go's. I'm not sure his collection of books will ever get smaller though - I'm not likely to let it.

He began the second last consolidation cycle on Wednesday, so he has been a little on the uncheery side of life these past few days. Fortunately, he is still sleeping well at night, so we all get a good sleep. Last night he was looked after by Nanna and Grandad here at our house. By all accounts the evening was a success and Grandad didn't have to do too many laps of the park with the pram. This morning we headed down to Nanna and Grandad's to see some of their friends who we weren't able to invite to his party.

I have just given him his last dose of mercaptopurine for this cycle. I still can't come to grips with having to feed my little boy something I use gloves to prepare. I suppose that's a good thing. After the next cycle, he is finished his 'consolidation' phase and moves into maintenance. This will mean the end of his doxorubicin (yay) but he will be getting methotrexate by vein for the rest of the cycles. Although he has had it before, it has always been given via his lumbar puncture, so we don't really know what to expect as far as side effects go when he gets it intravenously. He will remain on steroids, vinblastine and mercaptopurine - plus the other support medicines he receives.

I am so amazed at how well he seems to be taking this. All things being equal, it's as if this is all just normal. It probably is for him at the moment - his little body doesn't know anything else. I wonder if, once treatment is finished, he will notice a difference. I wonder if we will.

Reading with Mum. The book was Karli's when she was 7.

HAPPY BIRTHDAY

Today is Oliver's first birthday. Last night we enjoyed a 'star' party with family and some friends, celebrating the first tumultuous year of our little star. Oliver's favourite nursery rhyme is 'Twinkle, Twinkle Little Star' and since he hasn't really had an opportunity to bond with any branded characters as yet, we avoided Thomas the Tank Engine and Elmo. I wonder which one will be his first crush. My money's on Thomas.
He wasn't 100% yesterday for is party, though he did pick up towards the end of the day. He was pretty miserable all morning which we suspect was due to him bottoming out with his neutrophils. I was considering disinfecting everyone before they came through the door to make sure they weren't carrying any bugs, but I was otherwise occupied most of the time. He seemed to enk=joy spending time with everyone though. Understandably he was pretty overwhelmed by all the colourful toys, paper and decorations, but he sat and played with some of the family for a while without either of us being near by,which was a pleasant surprise.
We have enjoyed having the day to play with him and introduce him to more of his toys. He has taken to his trolley with wooden blocks, and is enjoying the hammer his Nanna bought him. We are currently seeking legal advice as to whether the Fremantle Docker's gifts his Uncle jarrad and Aunty Aimee bought qualify as some form of child abuse:) Needless to say, our loungeroom is quickly filling up with toys, and Christmas is only 6 weeks away.

Oliver with his new trolley with blocks. We suspect our little man intends on skipping the crawling stage and going straight into walking.

A happy Mum and Dad with a star sparkler for their little man.

Great Aunt Tatey has been sick most of the times we've had family do's and so hasn't been able to come around. This time she was in Broome. This photo was taken last weekish while she read Oliver 'The Very Hungry Caterpillar'. Thanks Gatey.

Nothing Doing

As we suspected, Oliver's count was low again, so he won't start the next cycle until next week. This meant we were in and out like a flash. It certainly was nice to have a large part of the day to relax at home, and with the dirty weather we were having, it was great to hang out inside with my little man while mum did some shopping.
The positive of him missing chemo is that he won't be on steroids for his birthday party on Saturday. Mum is very excited about the first birthday party. It's hard to believe he is already one year old. The time has flown so fast, despite all that has gone on in the past year.
He is pretty keen to get walking it seems. Although he hasn't got crawling licked yet, given half a chance he'd rather be on his feet and using only two limbs rather than four. That's a little bit scary for us, but very exciting. I can't wait until he's keeping us well and truly on our toes. We might need to think of doing something with the exposed brick walls in the house though.
His little 'girlfriend' has gotten the results of her scan back. She can't be operated on to remove her tumour because it will be too dangerous, but it has shrunk by 75% and is apparently maturing - which means it shouldn't grow anymore. Unfortunately, it will mean 3 monthly scans and tests to make sure it's behaving itself. A friend who is fighting his own battle with cancer helped me to identify the overall feeling of this experience - bittersweet. Whilst you are glad you have met others, you wish it could be under better circumstances. Whilst you are glad a child has finished treatment, you wish it was for ever and a complete severance from contact with the ward. Whilst you are glad your child is in remission, you know he isn't 100% out of the woods.

Birthdays

Tomorrow is Karli's birthday. I won't let on how old she is, but it represents the midpoint for our family of birthdays. Mine was last Thursday, and Oliver's is next Sunday. Unfortunately, we will spend the start of tomorrow in at PMH. Oliver is due for some sedation at 8.30am so that he can have another echocardiogram and ECG at 9.30. With any luck we will be out of there by lunchtime. Karli has a hair appointment in the afternoon, and then we are having some people around for a bbq to celebrate her extra year. I'm not sure how focussed she is on it, I think a lot of mum's attention is directed at her little man's party next Saturday.
Unfortunately he is likely to be on steroids and so will be quite ratty, but I suppose it will be a fitting way of summing up his first year. Karli and I have both had our moments this past week or so when we have been 'over it'. In some senses we feel justified in our self pity, but we also know that there are many others who have it much worse. Our little man is happy and playful - and is in fact quite a little gigglepot. As I have often said, without his NG tube, you wouldn't know he was sick. We are looking forward to celebrating the strength, courage and tenacity of our little man.

A Quick Visit

Yes, it was relatively brief today. We were walking out by 12pm, with Oliver already having received his small push of vinblastine, having had an always enjoyable chat to Dr Angela, and even collected our goodies from the pharmacy. Our little boy is still charging along. He is happy and cuddly and such a wonderful blessing to his mum and dad.

He passed a new milestone today - the first kiss of a girl. Our friends were in with their little baby girl and as they sat down together, Oliver leant over and gave her a kiss. It was very cute. Admittedly, his kisses are a little bit like a wet fish, but they are sweet just the same. We tried to get a photo, but there was a little bit of performance anxiety I think.

We head back in next Friday. He has another echocardiogram to make sure his heart muscle isn't being affected by the chemotherapy. Unfortunately it's on Karli's birthday, but hopefully it won't take all day. He won't be having another push of vinblastine because he didn't receive that particular dose (the third in the cycle) last time. So no more chemo for two weeks. It's great to know his body will be getting a rest. Enjoy the video's of our little man.

Back In The Game

Oliver's neutrophils were high enough to begin his next cycle today - just. He needs to be higher than 0.5 and he was 0.51. We were both a little tentative about him just scraping over the line, but it's done now, and he is back on track with his treatment. Excitingly, that means that he has had his last lumbar puncture. Every other time he has had one he has had another procedure happening on the same day, and so has generally had a general anaesthetic, or has been so doped up on pain relief that he hasn't needed any extra. This time he was given sedation purely for the LP, and he made it a memorable experience. Previously, when he has had scans that require him to be perfectly still, he has been sedated with chloral, and it has worked beautifully. This time, it seemed to only hype him up and he was not interested in going to sleep at all. After giving him 40 minutes to settle down the decision was made to give him another drug call clonidine and I would take him in to the treatment room so he could settle straight down on to the treatment bed. No way. The clonidine proved to be ineffective aswell. He looked to be tired, but he was partying - I actually wonder if he was hallucinating a little bit with the way he would stare at the ceiling, or hold out his arms for a hug from no-one. So, it was time for plan C. Droperidol was next on the list. It looked like this one wasn't going to work either, but he eventually nodded off and eventually you could have shaved his eyebrows off - if he had any. We are pretty happy about the lumbar punctures being finished with. Any procedure where someone is sticking a sharp implement around your child's spinal cord is always a bit nerve racking.

We saw our little one-legged friend today. What a champion. Always a smile on her face. Karli and I both chatted to her parents today. You want to be able to do something, or say something, but all you can do is sit and listen. I've said it before, but the kids on the ward are amazing. They just do what they need to do. They don't necessarily like it, but they just soldier on. And the parents, they do what needs to be done too. You can see it on their faces. Not surprisingly no-one is happy to be there. There is a look of resignation, contempt, and a little hatred - we don't want to be there, and we are angry that we have to rely on someone else to fix our child, that there is very little we can do for our babies (be they big or small), that we keep bringing them back to endure more treatment, and there is a lingering notion that maybe I am somehow responsible for my child's predicament. None of it is rational, of course. We are in fact doing the best thing for our child. We are not responsible for their predicament, but are responsible for them being able to receive the treatment they need - the very best treatment at the hands of some of the very best medical personnel. And in a strange way, while it is true that we don't want to be there and can't wait to leave, we do want to be there to support our friends and their children, and it hurts to leave them behind and go home when they must stay.

Chemo Tomorrow?

We head back in to the hospital tomorrow. If Oliver's blood is OK then he will be in line to start his third cycle. unfortunately, I don't think he has picked up enough. Of course we don't know, but he has been a little more sleepy and pale these last few days. I'm expecting that he won't have chemo tomorrow either, which raises the paradox of how I feel about his ongoing treatment.

From a nasty-chemicals-in-his-system point of view, we are glad he has been able to miss his last couple of treatments and just have a fairly regular life. The other side of the coin is that the treatments are destroying any lingering cancer cells, and keeping it that way. Without the treatment, I find myself wondering if we are giving the cancer a window of opportunity to resurrect itself, putting us back at square one. No point losing sleep about it. He may end up beginning his next cycle tomorrow. We'll have to wait and see.

We are really happy to hear that friends Wayne and Tammy are moving to Perth soon. Although we don't see them much, it's hard not to love spending time with them. I got off the phone with Wayne (Dougo) today and couldn't help but feel pretty special, that he was really excited at the prospect of catching up next week. We are looking forward to your arrival guys.

I often have people tell me about what's happening at home for them with their children, but with a regular disclaimer about it not being anything like what we have been through and that we have had a very rough ride, or that they don't think they could do it. I don't really know how to respond to that without belittling our predicament, because it is not one that I would wish on anybody. The truth is that you do what has to be done. I look at the mum's and dad's who come in to the gym each morning and am in awe. I know that many of them have a number of young children, many of whom don't sleep through the night, and that they also work fulltime jobs or are caring for a few kids while their partner is off working long hours. I'm not sure I could do what they are doing. One little boy who, apart from the cancer thing, sleeps well, runs almost to clockwork with his routine, eats everything we place remotely near his mouth, is tiring enough, and I have a flexible job that allows for nanna naps and early finishes. Parenting is a tough gig, and anyone who is doing it is probably doing it tough for most of the time. As for Oliver's predicament being much more dire than other children, in one sense it is. But kids get sick, and they can't tell you what is happening all the time, and so I think we all respond in as protective and caring way as we can, and if we don't get the right answers, we keep going in to bat for our little ones. I guess what I'm saying is, to all the parents out there, give yourselves a pat on the back, and all your little ones (and your partner) a big hug. It's ok to be protective and paranoid, because you'll never forgive yourself if you felt you should have done something but didn't. Never apologise for loving your babies. Kudos to all the mum's and dad's.

Missed Again

Oliver avoided his chemo again today. His neutrophils are still too low, but we expect them to pick up fairly quickly for next week. It seems a little strange that we should get so excited about Oliver effectively being too worn down to have his treatment, but it has been so nice to come back from hospital early and have half a day all together. All things going well, next week should see him back in to a big day, with the joy of steroids coming our way. If the next cycles go to schedule, Oliver will be 'roid raging for his birthday party.

Our little man turns 11 months old tomorrow, and we have a party planned for Saturday 8th November for his first birthday. Mum is very excited. She is in the throes of putting his invites together. We originally wanted to make it a bit of a thankyou aswell and invite people who have supported us through our little adventure. Unfortunately we ended up with about 104 peopleon our invite list, which seemed a little excessive for a 1st birthday party, so we have had to limit our scope to family.

Oliver is continuing to thrive. He hasn't been weighed for a couple of weeks, but he sure feels like he's put on a bit of weight. With the amount he's eating I wouldn't be surprised. He has a healthy little appetite. He has a lot more control on his tummy and is able to turn himself around pretty effectively. He's still creeping backwards, but I don't think we want him to get super mobile too soon. We can see it will be a little more hectic once he's moving.

Oliver practicing his one arm pushups.

Oliver talking to Sebastian about soccer.

Blissful Ignorance

Oliver was spared any chemo yesterday. His neutrophils were too low and he wasn't able to have the vinblastine push he was due, so we skip this dose and start a new cycle next week. It seems a little strange to completely miss a dose - it feels as if it's optional to have some of the treatment. I assumed that every dose was necessary, but apparently that isn't completely true.

We don't know how long he's been neutropenic for. The difficulty with weekly blood tests is that we don't get a regular idea of what is actually happening. It would seem that we have inadvertantly taken our neutropenic little boy to everything we would probably avoid if we knew - church, a group picnic, and mothers group. Hopefully he hasn't caught anything. Despite his low immunity, he is sleeping well, feeding well, and very playful and talkative. He's a little trooper and doesn't let much get him down. His bottom has started to break down a bit due to his neutropenia, and his scars are getting red, but he is still fighting and bringing smiles to our faces.

All's Well

All is well in Roebuckland at the moment. Oliver is tracking well, though we suspect that he will have a blood transfusion tomorrow as he is quite tired and ratty. We think his haemoglobin is dropping to the 'we-should-do-something-about-this' level. Other than that he is still happy and playful, and very talkative.

We went to church on Sunday, the first time since Oliver was diagnosed. We also met our life-group down at a park in Joondalup, and Karli went to mother's group today. So we are making an effort to reconnect to the world we dropped out of back in July. Whilst it would be nice to wrap ourselves up in our own little world, it was good to be around other people. Hopefully it will help us to refocus away from our little world on to some larger things in life again.

I am also in the process of trying to renew my abseiling qualifications, so I have done a day with Scripture Union (who I used to work for) out at Statham's Quarry, and am off to Mountain (Boya) Quarry on Monday with Outdoor Discoveries. It's nice to know I haven't completely lost all of my skills and knowledge, though I did ask Jamie and Ross to check my setup a few times on Friday.

I'll let Karli tell you about mother's group today. Needless to say, now that our little monkey is getting better, we are noticing that he is behind in a lot of his motor skills. It's not that this is necessarily concerning, but in the back of my mind there is still the question of 'what if he doesn't catch up'. In reality i know that he has plenty of time before we need to worry too much about that. He seems to be fairly advanced in his talking though. Well, he likes to make lots of noises.
So, again, it seems like it's just normal parenting stuff that is causing most consternation now - and I'm sure I'm not alone in that boat.

Update

We were back in hospital for Oliver's weekly treatment today. Because he is doing so well they have dropped it to one visit per week on Wednesday when all the other lymphoma patients are treated. So we now have just a midweek trip to the hospital and the opportunity to talk to other's who are being treated for the same cancer.

It's always a bit difficult to deal with the amount of time spent waiting in the hospital. We arrive early and get Oliver's blood tests done, which take about an hour to process. he needs to be weighed and measured, checked over by the doctor, then given his chemotherapy, which 2 weeks out of every 3 takes 10 minutes tops from the time we walk in to the treatment room until the time we walk out. In theory, we only need to be there for the length of time it takes to get his blood test back. In reality it took 4 hours today. We understand that there are many others who are coming in for treatment, that there are only so many nurses, and that treatment is given on a needs basis and not on a first in basis. This is fine by us, but why do we need to come in in the morning. Oliver is doing well enough that he usually ends up being close to the last to receive his treatment, so why not come in after lunch when everyone else has been done. I think next time we are going to head in at 1 and see how that goes.

That said, I have nothing but the highest praise for the medical staff at PMH that we have dealt with. Nearly all of them have been fantastic, aware of peoples desire to be as quick as possible, and always happy to help.

Oliver's 'roid rage' has disappeared as quickly as it came on, and he is becoming more energetic and playful each day, which is both exciting and exhausting. He is yet to crawl, but has figured out how to push himself backwards on his tummy, and is starting to pick up on how to bring his knees forward. Once he learns how to transfer some weight on to his legs and feet he'll be off.

People are Wonderful

Hello All

Today I want to thank all those who walked on behalf of Oliver last night in the Light the Night Walk for the Leukemia Foundation. I would have loved to have been there and I know if I had I would have been blown away. Thank you too to all the sponsors of those who walked. My Dad dropped in after the event which was lovely, to give us a balloon with a little light inside and the t-shirt he wore for Simon. After he left I had a little tear as I do now as I consider all those who are caring for us and all that that means for us.

To give you an update on where we are at, I now know the meaning of two commonly used phrases. 'Screaming blue murder' & I have forgotten the other one, needless to say this is Oliver on steroids. I know plenty of you who have seen our little cherub will not believe me, so perhaps I will endeavour to get video footage of this event as proof of his steroid induced disposition. This screaming comes when simply changing his nappy before a feed as experienced this evening and in order for him to stop whilst in his highchair eating, I shove the food in every time he opens his mouth, I laugh now but I tell you, keeping my patience and reminding myself that this is not my child but a monster posing as Oliver is tough at the time.

We are still getting smiles, very little laughter, he is more clingy and is currently doing a lot of nose scrunching, this I dont think is due to steroids, but he has taken after me, if any of you have noticed, I scrunch my nose when I laugh and apparently tended to do this as a kid too. At first it was when he smiled, now it is almost all the time. So often lately I wonder what my little lad is thinking.

Well tomorrow we look forward to a family day, Simon has the day off and we dont need to go into the hospital - thank God (literally)! Our hospital day has now changed from Tuesday to Wednesday as now that Oliver is weller and doesnt need to be seen twice a week, all the lymphoma patients are seen on a Wednesday. This is good for me as my mothers group is on a Tuesday so I can endeavour to get back there with Oliver from time to time, but for Simon this is a pain as he had changed all of his clients around to have Tuesdays and Fridays off. Wednesdays is also one of Simons busiest days. We are fortunate though as his clients are very understanding and accomodating. So the plan is for Simon to go back to working Fridays and just have Wednesdays off.

So we were at the hospital on Tuesday which was Olivers first day of Cycle 2, which is big chemo day, but we got home at 5:30 which was earlier than we expected. Oliver had his echocardiogram and Simon sat by his side and I sat on the chair watching my little babies heart on the screen and shed a tear (glad the room was dark) and thought of how I couldnt possibly handle anymore bad news. Cancer is one thing, but then the side effects of the chemo are something else, sometimes I catch myself panicking about what those might be for Oliver and then I realise that all I can do is pray that they will be minimal if any. However his next lot of chemo went ahead so the echocardiogram must have been ok.

I have had a few tears over the last week, another time was when Simon and I were on our own at a lovely organic cafe in Freo on Saturday having a cuppa in between our good friends Aaron & Narelle's wedding and reception and looking at photos on my mobile phone. Photos of Oliver in the hospital when he was born and thinking how did we go from this gorgeous, vulnerable little cutie to having a little boy with cancer.

A big thank you to Mum & Dad for babysitting Oliver on Saturday, we had 10 hours off, thats right 10 hours, where we thoroughly enjoyed watching our friends get married, then sitting upstairs at this cafe outside on the balcony looking down on the streets of Freo and then partying on at the reception.

Thank God for good friends! Aaron and Narelle have been great and it was so good to see them enjoying their big day and the absolute adoration they have for each other. I too was lucky to receive Narelle's bouquet and no I didnt elbow all the other girls aside to catch it, Narelle gave it to me - so it looks like Simon and I will have to get married all over again - yippee! On the subject of marriage, we are coming up for 10 years this December - I know, whoa and a friend of mine sent me a text saying that aluminium and tin are whats given to celebrate 10 years of marriage so I guess I am looking at getting a shed all for myself.

Lots of Love to you all

Karls

Testing Times

We were back in PMH today. Oliver had a full blood count done, requiring another finger prick and small vial of blood to be taken. Then we had an echo-cardiogram - a heart ultrasound. Unfortunately, for whatever reason, the technicians didn't know Oliver was so young, and as he was required to lay still, he did the small baby thing and cried and squirmed. As a consequence, we will have another done on Tuesday before he starts his new cycle of chemo.

Oliver requires regular tests not only to see how the cancer is responding to his chemotherapy, but also to see how the rest of his body is responding to it as well. The doxorubicin that causes his mucusitis can also affect his heart muscle, with infants being especially at risk. As I am wont to do, I recently raided amazon.com and brought a few books. One of them is "Supportive Care of Children with Cancer" - Current Therapy and Guidelines from the Children's Oncology Group. This is the group who are controlling the study Oliver is involved in. The book is about all of the supportive care measures that must go hand in hand with children's therapy in order to "sustain patients through their therapeutic ordeal and allow each patient to achieve maximum quality of life". It has given me an insight into why Oliver is having certain tests done, or why he has certain observations taken, and why we are asked certain questions. It has also alerted me to be ing more aware of his behaviours and how these may be an indicator of something else. It is at once empowering and overwhelming. it seems that the doxorubicin can be toxic both at certain dosage levels, that Oliver shouldn't need, but also cumulatively, which may become more of a problem as Oliver nears the end of his treatment and the levels of drugs he has received begin to add up. There may be other long term side effects that we will have to deal with further down the track.

Karli had some blood tests done today as well. They weren't exactly painless, and it was a stark reminder of what our little boy has been through during his stay in hospital, and will continue to go through as he continues his winning fight against cancer.

I meant to say something on Wednesday, but thankyou to all those who choose to avoid us when they have colds and other illnesses. A number of my clients who are a little under the weather have put their training sessions to the side in order to avoid taking the chance of passing anything on to me, and then possibly on to my little boy. This may not seem like much, but Oliver's immunity is such that it doesn't take much for him to catch something. Unfortunately, that can start a serious downward spiral.

On a similar and much sadder note, I was told today that one of the children in the ward passed away recently. It's hard to consider that this is happening in the rooms around you, especially as your own child only seems to get healthier. Our prayers and thoughts are with the family.

So Much Endured, So Much Needed

Oliver turned 10 months old yesterday. It's hard to believe that someone so young could have endured so much so early in life. It's harder to consider that there are others who are younger who have endured more. I have had the privilege to meet some of the most amazing children and parents over the past few months.

In some ways I am embarrassed to say that my son has already beaten his cancer and is just going through the motions to make sure it's completely defeated. Maybe I am being a little too optimistic, but as far as I know that is the truth of the matter. Whilst I know that he may relapse, and that he will have a greater than average chance of developing a new cancer, for now he is a healthy normal little boy.

Next Wednesday is the Leukemia Foundation's "Light the Night" (http://www.lightthenight.org.au/). Oliver's Nanna has a team called the Ollywalkers. They will be a group amongst others who will walk with different coloured glowing balloons to signify a different journey -

• Light a gold balloon to REMEMBER a loved one lost.
• Light a white balloon to CELEBRATE being a blood cancer survivor.
• Light a blue balloon to GIVE HOPE and show your support.

Next year, Oliver will walk with his own white balloon.

How sad it is that fundraising is required by hospitals and other foundations and groups to provide the care, support, vision and research to fight sickness and disease. How amazing that there are so many individuals and businesses who give so generously because they know how important it is. May I encourage you to give as you can to whichever cause most touches your heart. There are many organisations that are in desperate need of funds - I'm sure you can find something to support.

Having just endured the somewhat farcical WA election I am sure there must be something that can be done to put pressure on our politicians to direct funds to areas that will best serve our society. I'm sure it's not easy to do, but I'm sure it's not that difficult to direct funds towards improving the quality of life of everyone in our country.

End of Cycle 1

Oliver had his last lot of chemo for this cycle today. One down, 14 more to go. We are thankful that he hasn't responded to the treatment as badly as he has previously. Hopefully he won't have any nasty side effects any more and we will be able to go about life as normal as possible with a regular little boy.

He is able to spend a lot more time on his tummy now, and has started to move himself around to grab objects that are to the side of him. It's slow, but I don't think it will be long before he gets the hang of it. He doesn't seem to have the strength to get his legs under himself at the moment, but again I don't think it will take him long to figure it all out. He will soon be impressing us with his daily new tricks and keeping us on our toes.

Happy & Healthy

Yesterday was my first Father's Day. It was nice to be able to thank our dad's for their support over the past few months. We had breakfast with my dad, and then lunch with Karli's dad, and just lazed in the sun or played with Oliver. What more could you want from a Father's Day? Thankyou to all those who wished me a happy Father's Day.

Oliver continues to do well. He was a little bit ratty yesterday, and has been a little tired today, but is still laughing and playing. He also seems a little pale. We suspect that his haemoglobin and platelets are down, and that his neutrophils may also be low. We head back in to the hospital tomorrow for another round of chemo and more blood tests, so we will know what is going on then. For now, here is the little boy we have at the moment. If this last cycle is anything to go by, he should go from strength to strength.

We haven't posted anything for the last few days because things are going well. We started this blog to help keep people up to date with what was happening for Oliver with his cancer. At the moment, there is no news.
We have been waiting for his mucusitis to worsen over the past few days, but it hasn't done much at all. Our little boy is happy and playful, just a regular little 10 month old boy. We have only made one trip in to the hospital lately, and that was because he pulled his nasogastric tube out while he was sleeping last night. If not for that, we wouldn't have even gone in today since they told us not to bother on Tuesday.
What can I say? Things are fine. I feel kind of sheepish talking about all that has happened because to look at him, you would never believe he had been so sick, or even that he was on weekly chemotherapy. He is truly a remarkable little boy.

Amazing Kids

We arrived home at 12.30pm today. Earlier than expected, which was nice. It meant we had the afternoon in our own space. Oliver's surgery yesterday went well. He has now had his old port removed, and a new one inserted on the right hand side, where it was supposed to go originally. Given that the whole procedure took no more than an hour, compared with the four hours the first one took, I expect this one to work fine.
He didn't sleep well last night, so mum was kept up and didn't get much sleep either. I am constantly amazed at what she is capable of doing, and how much time, energy and happiness she has stored up for her little man. She seems to have a secret stash of love and patience all prepared for her little boy.
I realised on Friday that my job isn't to support and look after Oliver as much as it is to support and look after Karli. Mum is number 1 for Oliver, so I need to make sure she can give him the time and energy he needs from her. Fortunately, I think dad comes in as a close 2nd. After a week back at work, I think I have realised that I need to have more time available to support Karli and Oliver during the week, particularly on the days he heads in to hospital. So I think I will be cutting my work week back from 6 days to 4 for the next couple of months until we have worked out what the cycles are going to look like for us.
Next Sunday will be my first Father's Day. I'm so glad I have my little man in a healthier state to enjoy it with. Hopefully he won't have any side effects affecting him, and we expect to be at home.
On Friday we chatted to the mum of our little friend who had her leg removed. She seems to have taken it very well. Her athletics carnival is on next week and apparently she said very matter-of-factly that since she can't run, she'll go and help time and keep track of scores. I know I'd be using it as a perfect excuse to stay home. She even went to school twice last week - one week after having her leg amputated! She is an amazing little girl. You hear it all the time in hospital, and it sometimes seems so flippant, but kids are very resilient. And the kids that we have met are truly amazing. I hope I have their strength should I have to face the same battle.

A Crap Day

Hello all, its Karli here, I havent written for a while, but I just felt like it tonight, probably because I feel I need to do a little debriefing and venting. I think I thought that on this journey as we had experienced things before they would get easier but I discovered on Tuesday that they dont. I had to hand my little boy over to the team to be put under anaesthetic again and I cried. Now I find out today that I have to do that all again tomorrow as they have decided to remove Olivers port and put a new one in. We did think that this was coming and in the long run it makes things easier for him and removes some of the need for finger pricks, but that doesnt make it any easier for any of us.

To top it all off, I woke up to a steroidal monster this morning, he is eating us out of house and home, well not quite, but chugging down his solids and wanting to breastfeed with desperation, but the hardest part is because he is irritable, not knowing what he needs or wants - the same questions, is he still hungry? Is he in pain? Is he just grumpy? I like routine, so that fact that our routine is put out by all of this, I do not cope too well with. Needless to say that by the time I got the phonecall from Angela regarding the port I was none too happy and Simon got home at lunchtime to a screaming baby and a sobbing wife. I admit that this sobbing does not happen often and is something I should do more of, I tend to bottle things up until the volcano erupts and there is no stopping those tears.

Good news today is that I had a hair cut and a lovely head massage, although the thought of having to sit there and explain my life at the moment made me a little anxious, I managed to avoid the topic until 3/4 of the way through so I only had to talk for a little while about how sucky my life is at the moment. All the while the hair dresser is telling me to stay positive that that is the best thing to do and surprisingly I was quite calm and just nodded, but normally when people say stuff like that I get irate, as I feel that it devalues my feelings and my current situation and you know what sometimes I dont feel positive and dont want to be and want to be allowed to just say things are crap!

Blogs are good, but on some level I feel scared that you will all get to know more of the real me, which you may not like or it will no longer allow me to hide behind a facade of coping when I am not. I always feel compelled to add something positive at the end, knowing that everyone wants to hear positive, but I am not going to be sucked into that just because I feel it would make everyone feel better because that is not what this is about.

I thank you for reading and following our journey and for accepting us as we are and accepting that just like everyone we have our good days and our bad.

Oliver is going into theatre at 4:15 to have his port removed and a new one inserted, we would value your prayers for this and also that we would all remain sane as he has to fast for part of tomorrow and he will be very hungry - therefore making for a difficult situation.

God Bless

Lots of Love
Karli

A Long Day

As expected, yesterday was a bit of a marathon, especially for Karli. She didn't get home until 8.30, so was at the hospital for almost 12 hours. I had come home a little earlier. Oliver didn't actually start his chemotherapy until about 4pm. In the morning he had his blood taken and we were then fortunate enough to be given a room in the ward. With such a long day ahead it was nice to have some space to ourselves. After meeting with Dr Angela we headed off to the operating theatr rso that Oliver could have a lumbar puncture and some more bone marrow aspirations and trephines (suck out some marrow and take some bone). After getting back we then headed off to get an x-ray taken of Oliver's port to try to figure out why it wasn't bleeding back. Then it was back to the ward to wait for results of the x-ray. The decision was to use the line as it still allowed for fluids to be flushed in, so he had the necessary chemo given through his port and then they innjected some altaplase to dissolve a small clot that appeared to have formed on the end of his line that was acting like a valve. Unfortunately, the altaplase didn't work. They tried twice during the afternoon, then sent Karli home with altaplase in Oliver's line. They went back in at 8 this morning, but the line still wouldn't bleed back. It seems like we may have to have another one put in.
Oliver is steadily going down hill after his chemo. He is much more tired and clingy. He is starting to become a little more voracious with his eating. His bottom has started to break down again, and he seems to be in some pain. Hopefully we can get ahead of the curve with his bottom because it became quite bad last time. With any luck we will get a special barrier cream tomorrow.
He has a few more medications to take at the moment. The scariest being one of the new ones - mercaptopurine. It's scary because we need to wear gloves when handling it and avoid it touching any skin. But we are injecting it into his stomach. I'm sure it has something to do with the acidity of his stomach that it's harmless inside him, but it really brings home the nature of his treatment. It's going to be a long 11 months.

Quickie

Just a quick entry to keep you all informed of what is happening for us at the moment. I went back to work today. Although I wasn't particularly looking forward to it, it was great to be back and to see everyone who has supported us through these past few weeks.

Oliver is a normal little boy at the moment. he even looked like one last night after he pulled out his nasogastric tube. Unfortunately I had to take him back to the hospital to have it reinserted today. He is playful, and cheery, and energetic. It seems a shame to have to put him down to sleep. For now our challenge is regular parenting stuff. But that could all change tomorrow.

Tuesday is going to be a big long day, especially for Oliver. Tomorrow he gets 5 different chemo drugs - 2 of them are brand new, so we will have to wait and see what effect they have on him. He goes back on his steroids for 5 days at triple the last dose strength. He will also get some doxorubicin, which will likely cause him mucusitis and have him back in hospital by next Thursday. he also will undergo a general anaesthetic and have another bone marrow aspiration and trephine (marrow removed as well as a piece of bone) and will have a lumbar puncture to have methotrexate injected at the same time. Needless to say I am having a light day at work. I'll probably do that each Tuesday, though not every Tuesday is going to be like this one.
Friday's will be our other day in at hospital to get blood tests and a checkup.

As I filled people in on Oliver's health today I couldn't help but feel that it was all done and dusted and that life was back to normal. I'm not sure I seemed to excited about where Oliver is at, but I don't want to get my hopes up. It's hard to walk the fence between knowing he is clinically in remission, but that there may still be remnants and he still needs to finish off the next 315 days of chemotherapy. I suppose it's still a case of just taking each moment as it comes, and some of them will be very normal, and others will not.

Update

We came home on Wednesday afternoon as scheduled. Oliver had his bone marrow aspiration done in the morning while Karli went off to Centrelink She had to take identification papers to prove she was who she was in order to get the carers payment - what a shamozzle that turned out to be. Something so simple was, and still is proving to be, rather difficult. It's hard enough doing the right thing, why anyone would want to go through the rigmarole of defrauding Centrelink is beyond me. But, enough of all that.

We had a fairly nice afternoon on Wednesday and were looking forward to a good nights sleep, but Oliver had other idea's. He was fairly unsettled all night and most of the next day. We worked out that he was in some pain, at least that's what it seemed to be. It's so hard to work out what is happening for him. We don't want to give him something if he's just whingeing, but we don't want to hold back if he needs something either. I know this would be no different even without the cancer, but the cancer and chemo seem to make it just that little bit worse in our minds.

I met a young girl on Wednesday who has the same cancer as Oliver, only a she was little bit more advanced at diagnosis. I was chatting to her Dad and it seems to have been a rough ride for them so far, and also a tortuous path until a correct diagnosis for too. As I understand it, there have only been three children through the ward with ALCL, so given it's rarity it's nice to have someone to fight our common foe with. I hope to chat to the young girl just to find out how the chemo has affected her (she's about 12) and to get some idea of what might be happening for Oliver. Her dad mentioned that mum is destroying herself by reading things on the net. It's hard to get your head around the difference between adult and children's cancer. Unfortunately most of the information out there is about adults, since they make up about 97% of all cancer sufferers. So a lot of information is not terribly useful. I've pretty much tried to stick to specific organisations, and any other information is from sources that are focussed on children. You can probably guess that, given my lack of consistency with my blogs, I haven't done as much research as I would like.

We were back in at hospital today just to get some blood tests done, and Oliver was also tested for the flu as he has a bit of a cough and sneeze, and a runny nose and we think a sore throat. We were only there for about 2 hours, and the last 30 minutes was spent chatting to the consultant, which was really nice. We are so blessed to have Dr Alessandri looking after us. She is very bright, bubbly, caring and honest.

We were supposed to start chemo today but a procedure was missed on Wednesday, so that will happen on Tuesday and we will start chemo then. So we have about 5 days at home, touch wood, and we will hopefully get some good family time in. We are fairly tired though, and I'm not sure what family time will look like. Maybe a little picnic in the backyard is a good place to start.

I'll keep you posted on what's happening. Sometimes it seems like there isn't much to write about or I'm repeating myself, but this is as much for me as it is for everyone out there - feel free to skip bits you want. To update you on our little friend who had her leg removed last Friday, she is doing well and is off home today.

Going Home - Hopefully

Hopefully we will be back home tomorrow evening. Oliver is off all of his intravenous antibiotics and will be off his morphine by tomorrow morning. After he has had his bone marrow biopsy done his drip should be removed and we should be able to head off home once he’s been given the all clear. His PET scan has shown that there is no active cancer sites, and his CT scan has shown that his spleen and kymph tissue has returned to normal size. His bone scan has indicated that there are some hotspots on his bones, but without doing a bone biopsy they can’t be 100% certain it’s not cancer. But with the other two scans, his bone scan is likely to be showing up areas that are healing, since bone takes much longer than other tissues. So this is probably the best result we could have hoped for.

He had much more energy again today and is very playful and inquisitive. He does seem to be having some tummy issues that are causing some discomfort, but he doesn’t appear to be in pain per se. We are looking forward to taking him home and having atleast a day of normality before we come back in on Friday for the start of his next lot of chemo. We could have a fairly serious drug regime after that, with the extra chemo, plus some magnesium, and no doubt some other support medications aswell.

I’m not sure I’m absolutely ready to head back to work and start living a normal life, but I know that we would never choose to take on these extra challenges if we were given a choice. I’m sure it will be fine, and I hope it will mean that I will be much more organised. Maybe the extra demands will mean that I will stop procrastinating on all the things I want to get done and I will actually do them. I’ll see what happens tomorrow.

Doing Well

Karli had the day and night off yesterday and I have sent her home again tonight. She keeps beating herself up about it, but the truth is that she has been here every night and most of every day since Sunday. Mum is the source of all his nutrition and so she needs to be fully rested. Yesterday, Susie and Michelle came up from Perth and spent the day and evening with Karli. She came back this morning rested and looking brighter, though she still needs more good blocks of sleep. Last night, from all accounts, she got to do all the refreshing and enjoyable things she loves. Thanks Susie and Michelle.
Oliver continues to do well. He has a lot more energy and has been really playful the past few days. These videos were taken on Friday. I think we will be in trouble once we get the boy home. He looks like he’s ready to get going.

Oliver’s mucusitis is clearing up, as are the lesions on his skin. His morphine is slowly being reduced and he is off one of his antibiotics. They weren’t able to grow anything in his blood cultures, so it doesn’t look like he has any bacteria doing the rounds of his body. All in all, things are looking up at the moment.
Tomorrow the medical team will meet to discuss Oliver’s scans and other results and issues. We don’t expect any new information. We are going to have to sit tight as to what will happen with his port. I’m not sure what they will do at this stage. I suspect that they may try to needle him on Tuesday or Wednesday to see how it is working before they put him under another GA on Wednesday for a bone marrow biopsy. He may have to have removed an another inserted. This one should go a lot easier though.
His next lot of chemo will begin on Friday with 5 drugs. Two of them will be new to him, and the first 5 days of the cycle includes steroids. So we will have more side effects to watch out for come next week. I’ll also be heading back to work that week, so that will throw an extra challenge in to the mix.
So we are going along OK. We are tired and longing to get back home and have our little boy disconnected from all of his pumps and lines. I never realised how much I enjoyed being outside, and how much better it made me feel, until I had spent such long periods indoors. I hope Oliver enjoys being outside, because he will be sending a fair bit of time outside while he can. It will be his birthday in a couple of months and I’m looking forward to getting him a bike helmet and taking him for a ride in the bike trailer.
I should try to get some sleep while I can. You never know when it all might go pear shaped and sleep will become a distant thought.
Thanks again for your support.

The good news is that the PET scann seems to have been as good as it could have been. There are no areas in Oliver where the cancer is active. He had a CT scan yesterday and a bone scan today, but I expect that these will tell us that the affected areas in Oliver's body will have shrunk back to the size they were supposed to be, and that any lesions on his bones will have disappeared. We won't know for real until Monday or Tuesday. But yesterday was the first time the 'remission' word came up in discussions. I feel like that should fill me with joy and make me sing and dance around, but it doesn't. Oliver still has 11 more months of treatment, 11 more months during which we could have a significant amount of time at PMH, 11 more months of side effects, 11 more months in which to see new faces come through the doors to 3b. And we will live with the dark cloud of relapse hanging over our heads. But for now, he is winning, even if he doesn't always look it. Carpe diem will be our cry from now on.
It seems that Oliver's little tummy, or bowel, is cramping up a bit, causing him to not sleep terribly well. It didn't seem to cause him much pain today, but he wasn't in a good way last night, needing his morphine turned up. Tonight they will try a different drug to see how well it works.
He does seem to have a greater amount of energy. He didn't sleep much today, but was quite playful, which was lovely. He hasn't been as boisterous and active in his play for a quite a while. Unfortunately, yesterday they had to put a drip into his hand, so his right hand is bandaged up and splinted, meaning that he can't really grasp things to well, though it isn't really stopping him. Hopefully he will settle and sleep well for mum tonight - she needs a good block of sleep.
Karli and I took off for an hour tihs evening for a drink. Unfortunately I only had a pair of denim shorts on, so no Subiaco bar is going to let me in, so we ended up in Dome. We sat and cuddled and chatted a bit, but for the most part we just watched people, and allowed ourselves to be distracted by what was happening around us. We hardly had the capacity to really talk too much about anything in depth.
The weekend should be fairly quiet as far as procedures and anything new goes, as long as the canula in his hand keeps on keeping on. Monday or Tuesday a decision will need to be made about his port. It could be infected and need to come out, which would be a bummer. There's always something. What constitutes normal life will be quite different for us over the year to come.

Two Edged Sword

Mum and Olly had a rough night last night. Oliver's tummy is pretty upset, so not much sleep was had by Karli. His funny tummy has resulted in a practically perpetually running bottom, and the occasional very nasty looking diahorrea. I was over it by the end of today and I find it hard to not have somewhere to direct my anger. Olly is in fairly constant pain and discomfort, and can't tell us what is going on for him, and can only do what babies do, let it all out when it wants to come out.
It's the chemo that is doing this to him. The mucusitis, the susceptibility to infection, the funny tummy, the diahorrea, the drooling, the hair loss, the irritability, the pain and discomfort. It's the drugs we are giving him that are causing all these things. You're damned if you do and damned if you don't in a way. And there are no guarantees as to whether or not it's going to pay off. I hate it and what it is doing to my boy.
But of course there is a reason for it. We had a PET scan today. This scan is meant to pick up the hotspots of cancer, where it is doing the most growing. I haven't got anything specific, but apparently the scan showed that the chemo was working well. So it seems the chemo is doing everything it is supposed to do. I only wish it would just go for the cancer.
So we have a very big positive, but it's the negatives that we see everyday, and they are wearing. Tears, moaning, blood, itching, increased pain relief requirements, mouth care regimen's, bottom care regimens, special cream for lesions on the skin. Tomorrow we have a CT scan and bone marrow aspiration. During this time they will reinsert a canula and de needle Oliver because his port seems to be a bit infected and isn't doing what it should. We may be looking at surgery to rectify the problem. There just doesn't seem to be an end in sight, and it doesn't look like it will ever be an easy ride.

Today's Entry

I don’t know how I would describe the day. It has been a day of variety. Slowly we are beginning to grasp what is happening for us.

I didn’t stay at the hospital last night. I have been given my marching orders. So from now on I will head home at night and go back in the morning. I will try to remember that there is peak hour traffic next time. It took a while to get in today. As I drove in, I couldn’t help wondering what might have been happening for those people in the cars around me. For all I knew, some of them were making the same journey I was.

Oliver had another large and overly disgusting poo last night so I was thankful I wasn’t there. It was so bad that his little suit was thrown out. More trouble bleeding his line resulted in us getting a chest x-ray, and his bowel motions coupled with his obvious discomfort had him in for an ultrasound too. This was quite the marathon experience, with him being scanned by 4 different people so that they could get a consensus on what they were seeing. It wasn’t anything terribly bad. His mucusitis has inflamed his bowel, and some of it has folded over on itself. Just another thing to keep an eye on. Oliver’s bloodwork hasn’t been great of late. He has a bacterial infection, though no fever at the moment, and has zero neutrophils. He is getting potassium and magnesium infusions because, as we learnt today, the chemo can cause the kidneys to leak these minerals, and so Oliver hasn’t got enough in his blood. He has also developed some lesions on his skin that are somewhat baffling for the medical staff. His mouth has started to bleed from the mucusitis, his heart rate is racing along, and in order to keep him comfortable, he is back on a morphine injection. Despite all this going on for our little boy, he still managed to lift our spirits with giggles during peek-a-boo with mum, and dad was able to play with him a little bit during the day.

If all goes well tomorrow, we should be able to have his PET scan done at Charlie’s in the morning, and then hopefully have his skin looked at by the dermatologists back at PMH. All of his scans hinge on how well he is, as he needs to be either sedated or put under a general anaesthetic for them.

We learnt an interesting statistic today. Although it is a statistic from British Columbia in Canada, I can’t imagine it’s a big stretch to apply it here. Of children under 15, only 1.2 in a million get ALCL. So our little man is 1.2 in a million. Our consultant, Dr Angela Alessandri told us that. How does she know? She actually wrote the book, or at least the article – A Population-Based Study of Pediatric Anaplastic Large Cell Lymphoma . If you want to read it try http://www3.interscience.wiley.com/cgi-bin/fulltext/91016206/PDFSTART. Going through this, you want to know you have some good people on your side. I think we have been lucky enough to have found the best.

What you don’t want are people who make it harder. We have also found a few of those in hospital. I’m sure that it is just personality clashes, but I think we will be coming to the point of requesting that certain staff don’t deal with us. It’s tough enough without having to clash with staff.